Improving Communication about Care Goals for Children with ADHD [Internet]

Excerpt

Background: Children with attention-deficit/hyperactivity disorder (ADHD) experience fragmented health care among families, teachers, and clinicians. Fragmentation can result in poor communication, coordination of services, and outcomes. Requirements for “meaningful use” of electronic health records (EHRs) have elevated the role of patient portals as a standard communication tool for patients with chronic health conditions. Similarly, care managers are increasingly used for communication and care coordination for patients with chronic health conditions.

Objectives: We aimed to (1) compare the effectiveness of an electronic patient portal designed to communicate family-centered treatment preferences and goals to providers and educators (tier 1) with the electronic patient portal combined with a care manager to facilitate communication and care coordination (tier 2) for children with ADHD on ADHD symptoms (primary), goal attainment (secondary), and patient-reported outcomes (secondary); (2) assess treatment initiation and adherence and family engagement as mediators of intervention treatment effects; and (3) explore individual, family, and community factors that moderate intervention treatment effects.

Methods: The study design was a randomized clinical trial. We recruited 11 urban and suburban primary care pediatric practices. Children were eligible if they had ADHD, were 5 to 12 years old, and had received ADHD treatment from participating practices in the past year. Children were excluded for past year histories of autism and/or bipolar, psychotic, conduct, or suicidal disorders. Eligible children were consented and randomly assigned 1:1 within site to tier 1 (online patient portal only) or tier 2 interventions (online patient portal plus care manager). Both groups used an online patient portal that included secure online access to an ADHD dashboard containing family treatment preferences and goals, parent and teacher ADHD symptom scales, ADHD resources, and parent-teacher information-sharing. Care managers provided ADHD education to families; communicated quarterly with parents, teachers, and clinicians; and coordinated care with the patients' ADHD care team. Measures included changes in ADHD symptoms (Vanderbilt Parent Rating Scales [VPRS]) as the primary outcome; changes in goal attainment (Goal Attainment Scale [GAS]) and patient-reported outcomes (PROs) (parent-proxy and child-reported PROs) as secondary outcomes; and mental health services use (Services Assessment for Children and Adolescents) and family engagement with treatment (ADHD Engagement Scale [AES]) as mediators. Parents completed measures at study visits 1, 2, 3, and 4, while children 8 to 12 years old completed child PROs at study visits 2, 3, and 4. Patient addresses were geocoded to census tracts and overlaid with census and American Community Survey data. Differences in outcome measures between groups were assessed using intention-to-treat analysis and generalized linear and marginal mixed-effects models. Mediation analyses involving treatment initiation and adherence and family engagement were proposed for statistically significant outcomes. Geocoded data on participants supplemented individual and family data to explore individual, family, and community factors moderating treatment effects. Stakeholder parent, teacher, and clinician partners participated in biannual meetings and provided recommendations regarding study planning, conduct, analysis, and dissemination of findings. Nineteen parents in the tier 2 intervention completed semistructured interviews concerning their involvement with the care manager.

Results: A total of 303 eligible children and their parents were enrolled. Most children were 8 to 12 years old, male, in public schools, and taking ADHD medications at study visit 1. There were no between-group differences in demographic or neighborhood characteristics. A total of 206 (68%) parents and 92 (30%) teachers used the patient portal during the study period with no differences between groups. Care managers completed a mean of 2.2 (range, 0-6) care management sessions with parents and 0.5 (range, 0-3) sessions with teachers. In multivariate models adjusted for seasonality, race/ethnicity, urbanicity, parent education, income, and medication status, there were no significant intervention × time effects on VPRS, parent PRO (school performance, student engagement, peer relationships), child PRO (school performance, student engagement, peer relationships, family relationships, teacher connectedness), or GAS scores. At study visit 4, there were no between-group differences in mental health services use (64% vs 72%, P = .31) or in AES scores. Given no significant findings, mediation analyses were not performed. In interviews, parents described sporadic contact and lack of face-to-face engagement with care managers as limiting their engagement. No significant moderators were identified.

Conclusions: Care management did not produce outcomes that differed from patient portal use alone among children with ADHD. However, there was poor engagement with care managers, which likely influenced results. Future studies should consider methods to better engage families with care managers and patient portals to improve outcomes.

Limitations: This study took place in a single geographic area and integrated health system. Results may not be generalizable to other areas and systems. Care managers primarily communicated via email, text, and phone, which improved feasibility but limited acceptability among some families who preferred in-person interactions.